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1) What do these identities mean to you?2) Who do you let apply these identities to you?

3) What does it mean when other people get it wrong about you for example, you are POZ with great numbers, never had an OI, and someone calls you an "AIDs Patient"? for example, you have AIDS and made it through some serious infections and fears, and someone says "whats the big deal... I thought the cocktail solved all that years ago"?

4) If they are indeed different identities in the HIV community, how do we in the community deal wih such differences?

5) Are there cross cultural variations in membership in either identitiy. Could one be a PLA in one country but not in another. etc? Any racism? Classism?

6) Do differing identies have a bearing on activist work, or education work?

Discuss

« Last Edit: September 30, 2008, 10:45:00 PM by mecch »

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“From each, according to his ability; to each, according to his need” 1875 K Marx

Well, I can say that I have 'the AIDS'. It doesn't mean much to me, 'cept remind me of how sick I was almost two years ago, and how much better I am now. The cocktail does solve it, for many, but one has to be on meds for them to work - I wasn't at the time. I don't now how much it means in the gay HIV+ community, either. I told one guy on Manhunt that I had AIDS when he commented me being HIV+. I don't think he knew that there was a difference.

1) What do these identities mean to you?2) Who do you let apply these identities to you?

3) What does it mean when other people get it wrong about you for example, you are POZ with great numbers, never had an OI, and someone calls you an "AIDs Patient"? for example, you have AIDS and made it through some serious infections and fears, and someone says "whats the big deal... I thought the cocktail solved all that years ago"?

4) If they are indeed different identities in the HIV community, how do we in the community deal wih such differences?

5) Are there cross cultural variations in membership in either identitiy. Could one be a PLA in one country but not in another. etc? Any racism? Classism?

6) Do differing identies have a bearing on activist work, or education work?

I guess "HIV positive" is a much more positive expression, now that we've all learned HIV is simply a "chronic manageable condition". (Yeah, right.) The public seems to think that a person with HIV just pops a pill every night, uses a condom when he has sex, and goes on with life. The word "AIDS", though, still seems to have a sense of doom & gloom attached to it, as though a person with AIDS is knocking on death's door.

I'm not very scared of the word "AIDS" anymore. I got AIDS last fall, and I've felt pretty good this year. There are folks around here who have had AIDS since way back in the 1980s and are still doing well. For me, the specific wording of the disease just ain't that big of a deal anymore.

I guess "HIV positive" is a much more positive expression, now that we've all learned HIV is simply a "chronic manageable condition". (Yeah, right.) The public seems to think that a person with HIV just pops a pill every night, uses a condom when he has sex, and goes on with life. The word "AIDS", though, still seems to have a sense of doom & gloom attached to it, as though a person with AIDS is knocking on death's door.

I'm not very scared of the word "AIDS" anymore. I got AIDS last fall, and I've felt pretty good this year. There are folks around here who have had AIDS since way back in the 1980s and are still doing well. For me, the specific wording of the disease just ain't that big of a deal anymore.

I had AIDS snice 1998, and when I'm Asked, I always tell that person "Yes I Have AIDS" and I'm not just HIV+ I............ find NO SHAME in telling this when asked, but it's still not a badge of Honor to actually have AIDS and not to just be HIV+ so, to me their is a difference between being HIV+ and having AIDSit may not feel any different to me, but their really is a difference in having Full-Blown-Aids.................

« Last Edit: October 01, 2008, 12:00:17 AM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Right, denb45 --- our experiences are just all so different now. I see in your signature line that AIDS was horrible for you in 1997, with 3 OI's and disability soon to follow. When my T-cells dropped down to 68 (in 2007), somehow I didn't have any OI's, and didn't even miss a day of work, was just completely exhausted and worn-down and a little bit anemic. So for me, AIDS didn't really leave a lasting toll (so far), but for a lot of other people, it's been a downright awful experience. I think treatment naive patients and the new meds have really blurred the previous lines of distinction between HIV and AIDS, in a way that long-term survivors weren't always accustomed to.

I've been considering putting them on my profile but not sure I want to. Why or why not I might put them on my profile is, after all, related my views on the themes of this thread that I created.

Dont feel the need yet to share pictures, locale, etc etc. Sorry.

Last spring I was "long-term hiv neg" (with many HIV+ lovers, fuckbuddies in past, a few HIV+ boyfriends, several losses in 80's and 90's - no losses in last 10 years). Suddenly I'm poz AND treated.

Did i need to add the info in the parentheses in order to get HIV cred, somehow??Do I need to learn and use the lingo, such as "OI" to have certain cred in this forum?

Heres one to consider: in my country, LTS with AIDS diagnoses are MUCH more likely to be public about having HIV. If I look for support about treatment - I've only found LTS locally. POZ guys don't disclose to general public - in my country. (So I am very glad to have found this forum where there is a good mix of every possible experience!) My ID had to fish around to see if I, personally, had the intelligence to have supportive encounters with LTS - his worry is that recent seroconverters may or may not have productive interactions with LTS during the seroconvertors "adjustment period". Because the experiences between different "identities" varies so widely. For example he routinely advises recent seroconvertors NOT to look at the Internet for HIV info or support for many months. His fear is that if the newbie doesnt have critical skills to interpret information sources (dates, sources of info, etc.) - could be counterproductive.

Here's another: "POZ" vs "AIDs" identity - related to disclosure to public -- interesting choice in a community, eh? imagine this varies by country and city.Add to that "transmissable" vs. "treated and undetectable" - leads to interesting dynamics as well, no?

PS - my labs dont follow standard science and my ID says I am one of 3 quite unusual cases he has seen in his career. A friend of mine who survived cancer said that, actually, every serious illness comes with a "special case" or "unusual challenge" and treating for that, is the art of medicine. He said I was fortunate perhaps in that hopefully my special challenge was my strange seroconversion experience and now it could be clear sailing. I asked my ID and he said thats a great way of looking at it, and he expects the same.

« Last Edit: October 01, 2008, 04:04:46 AM by mecch »

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“From each, according to his ability; to each, according to his need” 1875 K Marx

Wow, I never thought I would need to deal with a question like yours. My partner was diagnosed with t-cell count of 14, which I believe means he has AIDS. We are both trying to keep up our spirits while we get him back to a “safer” t-cell count. The doctor seems to think we will be able to do this; however I must say I'm not as confident. Sorry for the little detour now back to the subject. I was tested a few weeks after my partner and came back as positive. The t-cell count for me was 465. I guess I'm still at the HIV positive stage, and I have not been showing any "symptoms.” We are both being forced to deal with what it means to have HIV/AIDS, and I do believe as far as society is concerned there is a difference. Sorry for the ramble this is my first post.

Sorry to hear the news about the two of you.Thanks for posting!Welcome to this forum!

I'm wearing similar shoes as you, being newbie. The great thing about this forum is that it mixes all the experiences, and also has good moderation, and the moderators and many of the members have knowledge of the current science so discussions end up productive.

I do not find your post to be a ramble. You'll be thinking about "what it means to have HIV/AIDS" quite a bit. And I do hope you both find yourself back in the comfort zone and that you become more confident about the prognosis for living well with HIV.

Just in your couple alone, you might end up with differing "identities". Whether they be socially applied, or medically applied, or meaningful to you two personally and privately, or not.... you will see.

Best to you!

« Last Edit: October 01, 2008, 04:49:07 AM by mecch »

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“From each, according to his ability; to each, according to his need” 1875 K Marx

This made me think, bizarely?, about OBAMA. You know when he entered the race I considered him metiz - mixed ethnicity. He goes along with whatever people want to apply to him - most people want him to be black, so hes the first "black candidate" - and sometimes he says hes black (?).

Sometimes he adjusts his message to the audience and the moment. Early in his campaign he gave a wonderful and nuanced speech about being, in fact, metiz. The nuance was more at his comfort level of "law professor" talking to intelligent people.

I teach in Europe and I show my students what the options are on a US census for ethnicity. The categories or "identities" don't always make sense to people from another culture. Hispanic???

If I could get 100% medical reimbursement by wearing a PLA (person living with AIDS) identity - gee I might be tempted. For the moment, I wouldn't want that identity socially or on the dating scene.

In my country, up until about 2000, AIDS diagnosis was the magic word that really improved the quality of life of people with HIV/AIDS. Now social and medical services are getting as nuanced about it as the HIV/AIDS community.

As the HIV epidemic continues its natural history, hiv neg and hiv pos people both are going to have to evolve a lot in our identity politics.

The Swiss blew a lot of peoples gaskets when this year they said treated and closely monitored HIV+ people were nontransmissable. This opened a can of worms in epidemiology for the epidemic, and really challenges a lot of established identities related to HIV.

« Last Edit: October 01, 2008, 04:35:26 AM by mecch »

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“From each, according to his ability; to each, according to his need” 1875 K Marx

I dont know with my ever lowest at 220 cd 4s and my 11 years of pill popping whether I m a 'relatively newcomer with hiv' or a 'moderatelylong time survivor with aids', but I dont care either wayI dont feel totally at home in one of the "categories".A rose is a rose by any other name.

I only DO care if being "hiv positive" wd be considered of higher ranking status than"having aids". In that case pls consider me as having aids.

Last time I checked, you had AIDS when your T-Cells dropped below 200. Admittedly I hadn't bothered to check again til just now once I had my own AIDS diagnosis. Does regaining T-Cells and going back above the 200 mark mean you no longer have AIDS? I don't think so. You still have basically the same immune system you had when you were below 200 because all the T-Cells that you lost that were uniquely trained against certain infections do not come back.

As to how I label myself, that depends on who I'm speaking to. If I'm dating, I identify as HIV+, if I'm talking to any of my medical support systems like Doctors, Nurses etcetera I say i have AIDS.

There is a clinical definition definition of AIDS, as others have mentioned above (T-cells below 200, or some series of opportunistic infections).

I have to say that I find your questions overly broad, and also have to potential to be divisive. That's not what our community needs.

It would help me if you could explain more specifically why this issue is of interest to you. To one extent or another, we have multiple identities, some of which are self-applied, others of which are given to us.

Regards,

Henry

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"Life in Lubbock, Texas, taught me two things: One is that God loves you and you're going to burn in hell. The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love." - Butch Hancock, Musician, The Flatlanders

Yessie... once your cd4's drop below 200 your considered to be full blown AIDS... even if your cd4's go back up... with meds and or not... OI's are counted for ssdi to be able to recieve a diability check... so at 1500cd4's with my meds... I'm still considered to have aids... whats one definition of the virus to the other... hiv or aids? as one bug said to another bug... its all the same! I'm alive and so far well... just do the best you can...

I have to say that I find your questions overly broad, and also have to potential to be divisive. That's not what our community needs.

It would help me if you could explain more specifically why this issue is of interest to you. To one extent or another, we have multiple identities, some of which are self-applied, others of which are given to us.

The questions are broad yeah, to spark different discussion tangents - my assumption was people might feel moved to respond to one or another, certainly not all.

All posters responses on any point are equally valid, I think. In any thread, not just this one. (Except if they insult or break this forums rules, of course.)

I agree the questions have the potential to be divisive but I PERSONALLY don't have that intention -- I think the identities can be divisive, and what each person chooses to do with such. Thus one rationale to discuss in a safe place such as this.

No I'm not writing a book, or doing a PHD survey, eek.

(Yes, I like Obama and I'm hardly a white supremacist! Geez that was a misreading, where did I say that?)

I agree very much that I tend to feel multiple identities - thats why I put up the two "identities" to be discussed. To see where I might fit in with the communities thinking on this. I see some people feel like me, somepeople stick to one identity, some people don't care, etc. etc.

My motivation - I felt some unexpressed identity issues reading other threads. So I was just wondering if it could be brought into the clear by posting this thread. The threads on stigma and internet personals ignorance really help me position myself some more, and these two identities were kinda underneath, at least for me.

I learned reading your posts. Hope some of you learned reading each other as well.

For instance I learned that its just a CD4 count that is criteria for AIDS diagnosis? Is that USA definition? Now I will ask my ID if I have AIDS because I had 197 during seroconversion, in May, for a few weeks I guess. So does that diagnosis hold for seroconversion counts, or is it only during the chronic phase when CD4s descend to eventually drop below 200 that one is diagnosed. Gee I thought one had to have OI, plus less than 200 to be diagnosed. I wonder what my ID will respond, he'll probably ask me my motivation for asking - once again calling up the subject of the two "identities"...

Best to all.

« Last Edit: October 01, 2008, 04:26:45 PM by mecch »

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“From each, according to his ability; to each, according to his need” 1875 K Marx

I don't like the CDC definition of AIDS as it doesn't take the person's current situation into account.

An AIDS-patient can be someone who has several OIs and is at the brink of death. It can be someone who has a CD4 count of 199 but is entirely asymptomatic or it can be someone who has had > 500CD4 for over 5 years and hasn't had any HIV-related problems for an even longer period.

I think the WHO categorisation in different stages of HIV infection is a much better system.

The WHO definition defines four different stages depending on the symptoms shown by the patient.

I consider myself to be an HIV+ person who has had AIDS (as defined by WHO Stage 4) and I am now asymptomatic. I find no value considering myself as having AIDS. It would only make me feel like a victim, or it might make me feel more "exclusive" when meeting HIV+ people who have never had any problems.

Thanks Sweden, these other criteria are very useful and quite different way of thinking than CDC.

In a nutshell, in my five months being HIV+, only PLAs are the ones in my daily life who acknowledge that I am poz simply and directly without too much judgments or quick attempts to put me in a safe identity.

Its been interesting talking to friends since I seroconverted because every single one of them wanted some sort of easy identity to put me in, based on their existing knowledge.

For the most part, hetero friends wanted me to tell them that I'm not dying or sick cause I'll be treated when necessary and life will continue. (Surprise, I'm already being treated and felt horrible before and according to USA criteria had "instant" AIDS???.) They all knew I was previously negative and in fine health. So the discussion always comes round to: "But in this day and age, with the cocktail, I'm sure you'll be fine".

Homo friends are ironically more judgmental than heteros about many different issues, and put all sorts of their own fears and agendas on me, a lot of these having to do with their own feelings and experiences with and about "PLA" versus "HIV+" identities. I think this is a natural reaction, and don't take it so personally. I don't have the information to educate them, and some of them think they are experts - but their info is different than my info.

One gay friend told me i was making too big a deal of being POZ and "only spiritually damaged people and drug addicts develop full-blown AIDS these days" and anyway (contradiction?) "it will take many years for your immunity to decline".

Another gay friend, upon hearing my fabulous results on HAART, said, first out of his mouth, "Yeah but youre still contagious." (Contagious was his exact word, yes). And then, when I told him I had a 45 min discussion with my ID about my new life as a poz and my ID said now that I had a low viral load like a "regular poz" i could reasonably start having sex again, but be safe, and that my ID thought me having sex was important, my friend said: "That's a bad idea. You shouldn't have sex until you're undetectable, and specialists just say that now to get you out of the office faster because you're gay and they know poz guys are going crazy and there is nothing they can do about it."

I kid you not.

More: treated PLA guys in my region told me I'd have a hard time finding other poz partners willing to have safe sex. I mentioned this to a gay friend (whos HIV status i dont know) who said that was PLAs acting trashy because they don't care anymore.

I asked my ID about the PLA no condom thing, and he seemed to concur with my gay friend, in so many words - that it was bad advice within the gay community.

Gay friends (HIV status unknown to me) told me I shouldn't tell anyone I am poz (cause, I suppose, they don't disclose? - how would I know, since they don't....). Gay friends told me not to get involved with PLAs. (They don't want me to have that as part of my identity...?)

As I said, I got the biggest feeling of honesty and nonjudment from PLAs, in my area. They seem to know who they are, and have a lot of respect and capacity to share and listen to others. On the other hand, I have to be really strong not to get personally anxious by some HIV war stories.

Its weird that I already experienced HIV war stories, horrible sickness, deaths, in the 80's and 90's, with friends and lovers, but they've been conveniently assigned to "history" that does not bear on today's experience of HIV. Big error?

Reading this forum helps me cope better in such situations in day-to-day life. There are a lot more divere people in this forum, and more diverse sources of information, than I find around me.

Best to all

« Last Edit: October 01, 2008, 06:58:09 PM by mecch »

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“From each, according to his ability; to each, according to his need” 1875 K Marx

When people, eg at work, ask why I taking them tablets I say "for chronic HIV-1 infection". Sometimes i even say the whole shebang (human immunodeficiency virus). The usual reaction is "oh!" then "what's that". The office gossip goes "Matt has AIDS". I am pains to explain I don't but yes I could have except the treatment works so I won't. This is usually followed up sometime later by "but you don't look like you have (er) HIV-stroke-AIDS"... (for I work in an office which does much development work overseas). The best counter to this came from one of the PAs who said "I don't care if he's got the clap, he's good at his job, so shut up". I had to laugh a bit.

personally I like "I am HIV-positive" and "I am a PLWHA" (but never abbreviated) but not "I am HIV" or "I'm POZ" ... (I am HIV is just not English). I especially dislike "I am an MSM+", but that's another thread....

In Canada, AIDS is diagnosed if a person has1. undergone testing for HIV and received a positive result and 2. has one or more of the clinical illnesses, or indicator diseases, that characterize AIDS.

Opinion of the NHS:The term 'AIDS' was first used by doctors when the exact nature of the HIV virus was not fully understood. However, the term is no longer widely used because it is too general to describe the many different conditions that can affect somebody with HIV. Specialists now prefer use the terms 'advanced', or 'late stage' HIV infection.

AA

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It is not the arrival that matters. It is the journey along the way. -- Michel Montaigne

personally I like "I am HIV-positive" and "I am a PLWHA" (but never abbreviated) but not "I am HIV" or "I'm POZ" ... (I am HIV is just not English). I especially dislike "I am an MSM+", but that's another thread....

- matt[/font]

PLWHA = I am a "person living with hiv/aids"??

"I am HIV" is ridiculous, yep.

Do people say "I am an male who has sex with men positive" comeon. maybe write that... say it?

I am Curious Yellow.

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“From each, according to his ability; to each, according to his need” 1875 K Marx

I am not sure that you can find what you seek, based on the questions you asked. Let me answer them first and you can see how my perception is very different.

1) What do these identities mean to you?

Absolutely nothing because I am not defined at all by my HIV infection.

2) Who do you let apply these identities to you?

Nobody, at least to my face. I cannot control what others do in private.

3) What does it mean when other people get it wrong about you

I no longer worry about what others think of me, nor will I be ruled by my infection. I do not care what strangers might think about me as I rely on friends to help keep me feeling balanced.

4) If they are indeed different identities in the HIV community, how do we in the community deal with such differences?

This question deserves its own thread. Far too complex for a simple discussion.

5) Are there cross cultural variations in membership in either identity. Could one be a PLA in one country but not in another. etc? Any racism? Classism?

Another question that is too broad.

6) Do differing identities have a bearing on activist work, or education work?

I believe that different experiences guide most people who choose to be activists or educators. Again, I do not like the label of identities, as it is my experience, in 24 years of being poz, that drives my activism or support work. I like what I do and I know that I am good at it, so why would I care what strangers think? In my support work I am very open about my circumstances, so most of these "identities" really become questions regarding my sexual orientation, HIV infection status and how I believe I am viewed within my communities.

It took me years, but I finally learned that you must remain true to yourself and part of that includes rejecting labels that other would place on you. Me and my life are unique, as they only apply to me. I am very capable of describing myself, but it takes time. That is also why I only care about what Stephen and my friends think of me, because they know me best. They know my reality and limitations and never once has any of them referred to me by my HIV status.

I believe that most identities are merely labels and are often used as a way of segmenting society.

What's the old saw? "You can call me anything, just don't call me late for dinner."

Anywho. . . .this is a very interesting thread. If I were to assign a term to my "medical condition", I guess I would say HIV+. I do, however, remember back in 1985 when medical personnel examined me and said that I had ARC . ..not as in Joan of... but...."AIDS-related complex".

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"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

6) Do differing identies have a bearing on activist work, or education work?

Discuss

Three years ago when I joined the Forums and began working as a volunteer to get support for the RWCA Reauthorization, I sent email to a newspaper re: an article I was writing. I did not state that I was a Commissioner on the Sonoma County Commission on AIDS, I have AIDS or any information about me as an individual. I live on less that a thoyusand bucks per month so the County of Sonoma offered to let me use their mail and they would pay the postage.

The first response from the publisher was, "Is this the article? It came from Theresa and anything that comes from the county is automatically considered "prepared" and "predictable". I introduced myself as a person living with AIDS to that paper, got front page on my first HIV funding article. There are many little newspapers a couple of large dailys, and radio stations and 1 TV news in Sonoma, Mendocino, Napa, Marin, Humboldt, and Lake Counties. Between my web site and my disclosure as a person living with AIDS to the press, I got more press than anyone ever has in the C.O.A.. They miss me. Have the best dayMichael

For my first day back, I have been itching to respond to this post, which is one that brings so much to the surface that it needs to be commented on.

HIV, the acronym that means Human Immunodeficiency Virus. I don't let anyone, nor do I myself, ever refer to me as an HIV. HIV is in my body, but it will not and cannot define who or what I am as a person. Using it as such, gives this acronym far too much credential because it is simply a term used to define a "viral protein" and that is all it does.

AIDS, the acronym defining Acquired Immune Deficiency Syndrome. Simple this one. As explained above, when a person has an opportunistic disease which is an indication of Immune deficiency, they are given the proper acronym to define their status for Medical Professionals. I have been given the AIDS description for 14 years now, and it all started with a CD4 of 20. Since that time, I have received mostly very good medical assistance from the VA, but many times I must instruct professionals about the different aspects of living with AIDS, because few are as well versed as I am, living with it for 25 years now.

We are in fact responsible for these short little abbreviations to have become so powerful in defining us. We are the only ones that are going to be able to squash any misuse of them to define us, our station in life or in fact anything associated with this disease.

I personally refuse to let anyone define me by the status of my health. I am a whole and perfect person just the way I am, and the fact that I contain HIV in my body is simply inconsequential to anything that goes on in my life with other people. That is not to say that I am not responsible for personal contact with others, because that goes for anyone, regardless of their HIV status.

Just wanted to comment Thanks.

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The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne